Thursday, November 01, 2007

Autism Awareness (Or Lack Thereof) At The Etownian

Khouri E. McGrann is a staff writer for the Etownian Online, an online publication of the Elizabethtown College in Pennsylvania. In Autism attacks: Addled adults aren’t appreciative the writer offers up opinions on the early screening recommendations of the American Academy of Pediatrics. The source of the expertise behind those opinions is not revealed in this editorial in which, amongst other pearls of wisdom, the staff writer informs us that:

The only reason parents should feel the need to test their child at all is a doctor’s reccomendation. [sic]

The author clearly knows nothing of the role parents typically play in bringing health issues to the attention of medical professionals. Our profoundly autistic son is 11 1/2. 10 years ago, knowing nothing of autism, we sought input from our family doctor concerning various behavioral issues we noticed about him and an almost complete lack of any speech. Our doctor said "he's a boy, boys develop speech later". We weren't convinced and our doctor was kind enough to refer us to a pediatrician who, after conducting various tests, concluded that our son was PDD-NOS. That diagnosis was subsequently changed to Autism Disorder and he has been assessed by both pediatrician and psychologist as profoundly autistic.

The Etownian editorial writer then goes on to offer this less than gentle reproach to worried parents:

If parents constantly misread their children’s behavior, then they aren’t appreciating their son or daughter’s unique qualities. They are acknowledging that their baby isn’t like every other baby and assuming something must be wrong, instead of valuing a special, unique offspring. I know I wouldn’t be too happy if my parents told me, “Yes, you were a quiet baby. And you loved color-coordinating your blocks. We thought you were autistic. We had you tested. Twice, in fact.”

To put this in the politest language possible this kind of lecture is a crock. Parents who seek medical attention for their children do so precisely because they love and value their children and have a deep sense of responsibility for their welfare. This "failure to appreciate your child" attack on parents is nonsense, pure nonsense.

But I suppose I should be thankful that the author has shared such autism wisdom with us. After all, were it not for reading this editorial I would never have known that:

Currently, one in 350 are autistic, making it more common than childhood cancer, blindness, and downs syndrome.

Someone should pass that bit of autism knowledge to the Center for Disease Control which erroneously estimates autism prevalence at 1 in 150.

101 Noteworthy Sites on Asperger's & Autism Spectrum Disorders

Facing Autism on Facebook

Why ABA For Autism?

The effectiveness of ABA-based intervention in ASDs has been well documented through 5 decades of research by using single-subject methodology21,25,27,28 and in controlled studies of comprehensive early intensive behavioral intervention programs in university and community settings.29–40 Children who receive early intensive behavioral treatment have been shown to make substantial, sustained gains in IQ, language, academic performance, and adaptive behavior as well as some measures of social behavior, and their outcomes have been significantly better than those of children in control groups.31–4American Academy of Pediatrics, Management of Children with Autism Spectrum Disorders

"We have to look also at environmental factors, and from my point of view, the interaction between the genetic factors and the environmental factors ... It looks like some shared environmental factors play a role in autism, and the study really points toward factors that are early in life that affect the development of the child"
Joachim Hallmayer, MD, associate professor of psychiatry at Stanford University in California

Even Out Environmental and Genetic Autism Research Funding

Right now, about 10 to 20 times more research dollars are spent on studies of the genetic causes of autism than on environmental ones.

We need to even out the funding.

Irva Hertz-Picciotto, UC Davis M.I.N.D. Institute Researcher

My Autism Pledge For Conor

Today I pledge to continue;I Pledge to continue to fight for the availability of effective autism treatments;I Pledge to continue to fight for a real education for autistic children;I Pledge to continue to fight for decent residential care for autistic adults;I Pledge to continue to fight for a cure for autism;I Pledge to continue finding joy in my son but not in the autism disorder that restricts his life;Today, and every day, I Pledge to continue to hope for a better life for Conor and others with autism, through accommodation, care, respect, treatment, and some day, a cure;Today, and every day, I Pledge to continue to fight for the best possible life for Conor, my son with autistic disorder.

Dr. Jon Poling : Blinders Won’t Reduce Autism

"Fortunately, the ‘better diagnosis’ myth has been soundly debunked. ... only a smaller percentage of this staggering rise can be explained by means other than a true increase.

Because purely genetic diseases do not rise precipitously, the corollary to a true autism increase is clear — genes only load the gun and it is the environment that pulls the trigger. Autism is best redefined as an environmental disease with genetic susceptibilities."

We should be investing our research dollars into discovering environmental factors that we can change, not more poorly targeted genetic studies that offer no hope of early intervention. Pesticides, mercury, aluminum, several drugs, dietary factors, infectious agents and yes — vaccines — are all in the research agenda.

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It's NOT About ME

I am the father of two sons one of whom is severely autistic with intellectual disability. I have advocated for autism services for autistic children, students and adults in New Brunswick, Canada and I blog and comment about autism on the world wide web. And I like to walk .. a lot.